Monday, December 12, 2016

Less than a year ago...

Less than a year ago I read a post on a fellow CDKL5 child's facebook support page that made my heart race and panic set in. It was the night that Harper's mom Penny wrote that Harper was sick and that she was in the PICU. I was so beside myself I didn't know what else to do other than write. It was the only way I knew how to get my thoughts organized and the only way I felt like I could help because others read my blog posts and that would mean more prayers would be sent up.At this moment I honestly feel like copying and pasting the first four paragraphs of that post. I have no better way of expressing my thoughts right now. Again, I find myself empty and broken. There is yet again another child with CDKL5 being transferred to the children's hospital, in fact this time it is actually Sonzee's children's hospital. It started as a fever and what we know is that Sonzee's CDKL5 sister, Lily, is very sick. My brain is again clouded but this time more so with confusion. How does a "simple" cold/fever become complex in a matter of minutes. Why do our girls hide things so well?

I have my usual assortment of emotions; fear, panic, and sadness ranking among the top. The shock component has sadly dissipated after living 20 months of life with a child who has a CDKL5 mutation. Tonight my heart is breaking specifically for Lily and her family. Lily's mom Kim was the first CDKL5 mom who I met in person. She came to PCH during one of Sonzee's first hospitalizations shortly after her diagnosis. She sat with Sam and I for a long time. She is one of the sweetest and selfless people I have ever met.

Again I feel helpless and all I can do is pray for a miracle and hope to reach enough people who will do the same. CDKL5 does not just take away the ability for our children to do daily tasks; it causes many tears and breaks an unnecessary amount of hearts far too often.

Please pray for Lily and her family tonight. Please pray that she can overcome this sickness and that my follow up post(s) will only be good news moving forward. Please pray for the CDKL5 community tonight as we rally around our CDKL5 daughter and sister, Lily, as well as her family.